After the last couple of miserable, raging posts, here’s a snifter of sunshine, light and colour. #107days continues to be extraordinary. A truly unique campaign. Fundraising is a go go. We’re ticking off some of the items on the Connor Manifesto which is amazing. The tender is out for the Serious Case Review, jointly commissioned by NHS England and Oxfordshire Adult Safeguarding Board. This has a broad remit, to add to and extend the Verita findings. The terms of reference for the review into unexpected deaths in Sloven learning disability and mental health services are being decided at the mo. And the police are conducting a full investigation. Our lovely CID guy called with the news yesterday. LB would be seriously delighted with this decision. His belief in the criminal justice system undented.

Finally, Landscape for a Sparrowhawk, by the remarkable Janet Read (started on the train on the way to LB’s funeral that hot summer’s day last July) is now above the fireplace in our front room.

The spirit and essence of our beautiful dude woven into our lives in so many ways.

Had a full on week, last week. Monday, the Partnership Steering Group’s one day conference at Manchester University, Day 82, #107days. An event shared and chaired by learning disabled people throughout. Tuesday, a meeting with our MP, Andrew Smith, and Deborah Coles from INQUEST. Wednesday evening, Rich and I hung out with young people at a group run by My Life My Choice and Parasol. They wanted to talk about LB. Anger, rage, disbelief and bafflement that he was left to bath unsupervised.

Friday, the Cardiff Law School’s conference, Deprivation of Liberty Procedures (Safeguards for whom?), at the Law Society. LB’s artwork illustrated the flyer and Paul Bowen, QC, dedicated his paper to #107days. The bar (sorry) preventing the involvement, engagement and recognition of learning disabled people as full citizens is clearly under assault.

That morning, I  walked from the hotel to the Law Society and realised within minutes I was going to pass LB’s favourite shop of all time. One of the spaces that anchored London as his favourite city and his longstanding desire to ‘be a Londoner Mum’. Model Zone. At the far end of Oxford Street. Model Zone. Where LB would carefully snap the wing mirrors off thoughtfully selected, hugely expensive, limited edition die cast coaches before leaving the shop. With an audience of gawpers. He’d learned over time, and a shedload of distress, that these would break at some point and found a way of managing that moment of inevitability.

I instantly got that now familiar feeling of part primal howl, part panic attack, instant blurred vision and countering internal steeling of ‘deep.breath.deep.breath…’

MZ was shut. Boarded up and being redeveloped.

Eh?

Closed?

……? When? How?

I googled it on my ipad in a nearby doorway. They went bust days before LB died.

[???] …

Walking on to Chancery Lane, I carefully removed the wing mirrors as LB learned to do over time. Model Zone was shut. A piece of his childhood gone. A space we shared and enjoyed. Better it was shut than experiencing the pain of seeing punters carrying on die cast model life without the quirky young dude who broke all the rules of die cast model ownership. With care.

Warning: It’s 12.30am. I’m on Madison time after a full on, action packed four days in the States followed by Epic Party Night. My ability to think, write and judge is probably a bit wonky. I just caught up with the latest ‘news’ from the Winterbourne Joint Improvement Programme and I’m going to be a bit short and to the point. LB died (he died?) and I really don’t want to hear more shite about shite.

1. Ditch the niceties and stop thinking there is some “treat” space to ‘focus energies and attention on what can be achieved’. Real people are experiencing crapshite experiences that would not be acceptable to most people’s pets.  Stating ‘We are where we are’ as if there is, or has been, no agency involved is offensive and unacceptable.
2. The passive, hopeless ‘we’ve only got a year to go so what can we achieve?’ is nails on blackboard stuff. If you take on a tough gig, you should really have an understanding of the terrain.
3. Ditch the ‘we must give hope to the individuals and families who are currently in hospital settings…’ Those individuals and families really don’t need your empty words. They have a much more sophisticated understanding of the landscape of provision and horror they or their family members are experiencing. They want action.
4. ‘We must not decide the challenge is too difficult and give up’. Er. Not sure what this is supposed to mean/achieve. But if you want to bung me whatever salary scale to work within such parameters, please do. “Ah, thank you NHS/social care employer, I took on the task with good faith but the challenge was a bit tricksy so I’m giving up… Oh and that tiny blip about abuse in one of my residential provisions? We really don’t need to go there, I’m doing my best…”
5. ‘I’m pleased to announce there has been a 100% return from NHS local and national commissioners’. Eh? So there is a choice attached to providing these figures?  As ever, I can’t help wondering if there is some sort of longstanding joke going on. The whole system seems to be hamstrung by nonsensical demands and yet in areas in which attention really needs to be focused, there is an ‘opt in’ attitude.
6. Stating ‘if you want to know what the situation is in your area please do ask your local CCG’ is a bit like saying ‘Rarra hoo ho, bolowlo, bloooblom gara‘. Most people don’t know what a ‘CCG’ is and if they do, contacting them is one of those mysterious (utterly frustrating) processes.
7. The discrepancy between the figures and ‘what was agreed by the partners in the Concordat’ is something you should be dealing with. Presenting a set of unexplained figures that don’t fit with the model of what you expected to achieve at this point, with a bit of a curious question mark attached is, erm, fucking unacceptable.
8. Not sure now you have ‘robust and detailed quarterly figures’ this will actually lead to change.
9. Talking in terms of ‘local heroes’ is pretty offensive. It shouldn’t be seen as ‘heroic’ to provide appropriate support/provision.
10. As I always bang on about, the focus on the well being of people who were in Winterbourne View ignores people in other, similar settings.
11. ”Unsticking’ complex situations’… ? Eh? What does this mean?

Basically, what a pile of old crap. It strikes me that we have an extreme case of provision for a group of people that no one cares for or about, other than their family (if they have one), that have a historically designated space (despite a body of evidence that challenges this space) in which all bets are off. Restrain, medicate and leave to fester. And yet Commissioners can find around £200,000 per year to keep people in places you wouldn’t leave your dog in for a weekend.

LB died (he died?). Can you imagine? Can you imagine your 18 year old son losing his life through sheer carelessness in a hospital? Nearly a year ago now. The only concrete response other than the crap hole unit he was in closing (which is a cheap shot to avoid actually changing provision), is a blanket ban on bathing for remaining patients in the next door unit.

I want to ask the Winterbourne JIP/Department of Health/NHS England;

What the fuck are you actually doing?

What have you done all this time?

How much funding has been spent on the Winterbourne JIP?

Last night was ‘the party night to end all Justice for LB party nights’ (Day 73 of #107days). We don’t do things by halves on this campaign. There was a two pronged approach to this night; a big bash at the Oxford Sports and Social Club organised by Becca and the life raft and an English Country Dance at Bletchingdon Village Hall organised by Caroline. I work with Caroline and she came to the JR hospital with me on July 4th last year. I don’t know what it’s like to be with someone in such unspeakable circumstances (my mate Mary who works in A&E was also there). Caroline shared that experience.

The big bash caused Becca and the gang quite a few sleepless nights. Volunteers queued up instantly – two great bands from Oxford (Mean Montage and Yowash), Alan Joyce, the bacon bap seller from outside Oxford Rail Station, NansforJustice who covered the cost of the room which was offered to us at a great rate by Jenny O’Loughlin, the General Manager at the Oxford Sports and Social Club (OSSC). The most stylish tickets imaginable were designed by Vic, Sam and Trev from Identica, and LNS Print produced em for free. Frog Orange produced an Eddie Stobart themed balloon bouquet and backdrop ‘LB’.

The ticket sales were less hot off the press and given the ballroom at OSSC holds hundreds, there were some anxious moments around ending up with a handful of peeps kicking around awkwardly in the face of such generous contributions. This was an anxiety Becca, her family (particularly Chris, Rory and Julian) and the life raft absorbed and ran with. And, on the night, there was a brilliant turnout. Nothing like a bit of ‘if you build it they will come’ with a hefty dose of behind the scenes organisational graft and magic.

And it was a truly great party. The music was fab, the baps and ice cream fantastic. Charlie’s Angels were there along with other school staff, LB’s classmates, friends, family, Parasol, the young dude from Day 41 and many, many more.

What helped make it such a good party was the space. The giant ballroom (Emperor Ballroom) at the OSSC is a legendary space; enormous, vintage decor, opening out onto a patio (right word?) with tables and chairs,  a cricket pitch and playing fields. With a good value bar. It’s a space that allows different levels of party going/attendance and young kids/dudes or adults to randomly roam, run, spin, withdraw, play a spontaneous game of footy and/or dance their socks off.

 For us, it’s a space in which Rosie stood in for Rich when she was about 12 to hand out medals to the tiny footy team he coached (and she assisted) in his absence. A fear inducing experience she carried off brilliantly. Around the same time, Rich was hoiked out of the enormous line dancing class we went to for being too disruptive. He was made to first stand at the front, then excluded. Last night he returned to the stage in triumph as The Amazing Geoffrey and Kid Rage (aka Rich and Busker John) did a short set of LB’s fave songs to a delighted audience. Their first ever gig together.

It’s also where we held the party after LB’s do last July.

Sad times that the club is due for demolition in 2016. But an epic ‘party night to end all Justice for LB party nights’.  In Bletchingdon and Roman Way, Cowley. LB would have loved it.

Extract from a special Inquiry.

‘We now report, with sadness, our findings and, in a spirit of hopefulness, make our recommendations […] We believe the public, as a matter of right, as well as by reason of the fact that it pays for the NHS, is entitled to sound and reliable standards from those employed to administer it’. 

Principal conclusions; the failure of staff to cooperate (largely because of the actions of the consultant psychiatrist who, through arrogance, withdrew from the original inquiry), the failure of duty by the area local authority and lack of effective monitoring by the regional health authority. A lack of implementing current government policy. No evidence (pretty much) of cruelty or ill-treatment of patients but extremely low standards of nursing care and accompanying poor quality of life of patients. A lack of effective nursing leadership.

A few years earlier, a member of staff flagged up that nursing staff ‘had lost their way’. A report pretty much ignored. Eighteen months later an officer visited the hospital and was disturbed by what she saw. Her views were ignored and no substantial improvement effected. Aside from some excellent nurses, there was excessive and improper use of seclusion.

The hospital buildings were neglected and dangerous. Standards of hygiene were often appalling. Faeces and urine were left unattended. Morale was extremely low and could be attributed to the psychiatrist who was a poor appointment in terms of personality. Other medical colleagues were reluctant to work there because of the ‘current practices‘.

Administration was poor at every level with no clear lines of communication. When the hospital was taken over after reorganisation it was already run down and experiencing difficulties. The ‘new administration at an area level adopted a philosophy of seeking to improve the situation by non-intervention and persuasion. This policy was soon shown to be ineffectual but it was nevertheless persisted in for too long. […] Even though there was a failure on the part of certain members of the area management team to keep their colleagues properly informed of adversed developments, the area management team was well aware that the situation was deteriorating but lacked either the will or the skills to do anything about it. There were fitful, sporadic manifestations of concern, but regrettably, these were often more ritualistic than realistic contributions to a resolution of the difficulties.’

A ‘wait and see‘ attitude was adopted at regional level despite knowledge of the price of waiting paid by patients.

The Normansfield Inquiry, 1978

Thanks to Chris Hatton for tweeting this link earlier. 

Yesterday John Williams adopted Day 57 of #107days and dedicated his comedy show, ‘My son’s not Rainman’, to LB. He was performing at the Kenton Theatre in Henley along with Dave Griffith, aka King Cnut. Dave in a bizarre coincidence given we’ve followed each other on twitter for a while, is actually Will and Owen’s uncle. Funny world. The show was a sell out.

John (I think I can call him that now as we had a big old hug and he is like one of those people you feel like you’ve known your whole life) was hilarious. He captured the whole randomness of life with a dude like LB and his son, Fin with the funniest of funny anecdotes. Stories of crazy golf, blue tac and biting. A letter his son wrote him when he went away, signed ‘lost and lost of love’ with a matchstick drawing of the pair of them. A letter he later defaced adding Poohead and drawing a turd on his dad’s head. We laughed till we cried. What made the show so powerful was the deep love and affection that John openly demonstrated for Fin throughout. And what was even more blinking brilliant was how much the audience laughed, everyone getting a dose of a wonderful dad son relationship that is just a bit different.

John ended with a massive shout out for LB, #107days and played Divine Comedy/LB film on the big screen. More tears…

After Marcus Richardson’s debut as a comedy poet (very, very funny with moves that have no name), it was King Cnut’s turn with ‘C U in Court’. This is a hilarious story about ‘the little man’ taking on a giant corporation over the use of ‘CNUT (French Correction)’ on t-shirts. Dave’s strong sense of justice combined with remarkable determination and tenacity meant he not only refused to be bullied by the French Connection monster (who seem to have PR/Comms staff fresh from the Sloven School of Staff Training) but became an expert in trademark law and set about policing their design activities. Brilliantly funny and astonishing.

It was a right old belly laugh of an evening and seeing John at the end of the show, working his bollocks off selling LB’s postcards in the foyer was awesome. 58 days of something you couldn’t make up.